HI JENNY, I FIGURED I WOULD WRITE YOU OUTSIDE OF VIC'S THREAD SINCE THAT IS DEDICATED TO HIS INFO and i did not want to get it off the subject ...
i was one of those who did not use meds for the first few years. i downed lots of ibuprofen and actually still do at times.
as far as my medications, when, i first got out of the hospital, and did not know why i was having such pain, i tried vicodin, tylenol with codeine, percocet and i'm not even sure what else, but i was not happy with the effects of the any of narcotics at all. i was nauseous, and i was tired all the time, and i got jumpy from most of them and did not find the difference in my pain level all that much different. so i just dumped them all in the toilet and used the ibuprofen for a long time. i finally, after having read a bunch of RSD information, told my doctor i would try neurontin and we decided that 400mg three times a day was the best does for me, and that is what i have taken for years. i also take tranxene. i started taking it for pain attacks, but found that it worked perfectly for those horrid night leg cramps, and so when the panic attacks stopped, i continued to take the tranxene at bedtime. then i had taken trazadone for the pain and also the depression, and it worked well but i lost the ability to feel when i needed to urinate and did not like that so much, so i stopped it. it did help with the pain but the side effect was too much for me. i also tried cymbalta and almost died from it. i felt superb and pain free and floating on it, but by day two i was completely unable to anything but sleep and it took me several days to get over that. it seems it dehydrates me because my liver does not process medication for some unknown reason. i also tried vioxx and had a build up of edema in my upper body and ended up in the hospital getting a CT scan. i also used ultram for breakthrough pain for a while, but again, it made me nauseous and jittery, so i gave up on that. so as you can see, me and medications don't work too well. i also take a bp med and a heart arrythmia med. oh and one time i also tried a mixture of lidocaine and a few other meds in cream form and it helped, but i got such a skin irritation that i still have scars from it, so as i said, me and medications are not good together. and i see a therapist who makes it unnecessary for me to take any antidepressants!
i take a multi vitamin, c, e, b-complex, and bete carotene too.
i use heating pads alot and elevate my legs on and off thoughout the day. so all that being said, now, i must say one thing, please do not say 'just' an LPN. i worked with some absolutely wonderful LPNs in my years and one is still a very good friend, and i was her maid of honor 10 years ago, cane, brace, and all ... so that is a good friend indeed. she was my partner on a very busy surgical post op floor, and we ran it all night as a team. and i always make sure she never forgets how important her position was and still is.
joan

Hello,

Thanks for all the info! I truly CAN NOT imagine being so sensitive to so many different kinds of meds and trying to deal with this pain, especially during major flare-ups, you have my sincerest sympathy! It seem that the only med I have a sensitivity to is the only one that does work for you, neurontin. I can only take 300mg before bed. When the doc tried to increase it I had some really bizarre side effects. I've never heard of tranxene but will look it up in my drug book because I too have MAJOR panic attacks since getting sick and my doc doesn't want to give me xanax, which is too bad because it really worked-not only for my anxiety but also on my racing pulse! I have begun getting heart palpitations as well, especially at night but have yet to be prescribed anything that helps!

By the way, I should have started a new thread about the supplements I am taking that you asked about because I'm afraid I hijacked donny's. sorry, donny, so if you are still interested that's where the info is. Also, thanks for the kind words about being an LPN, I too have worked with wonderful LPN's and RN's but I also know how much more education it takes to be an RN. Both of my aunts are RN's and I ask for their advice all the time. My sister is an LPN also and she is so smart it's almost scarey.

Sad to say though, since being sick I have lost a lot of respect for the medical industry as a whole, from doctors, to therapists, to nurses, to receptionists. I feel bad saying that but the truth is I wouldn't dream of treating people the way that I have been treated at times over the last three years. I have never been so frustrated, angry, humiliated, etc. as I have been since my dx. Does that sound horrible? I hope I'm not offending anyone....I guess we can only continue to hope that a cure is found for this maddening disease and then we won't have deal with those kind of issues anymore!

Thanks again for your kind words. They are always appreciated as is any advice, info. etc. hope to hear from you soon, jen

hi jenny,
i feel the same way about many people in the medical field, maybe because i know better. but i do know there are good and bad everything, doctors, nurses, PT, lawyers etc., except for insurance claimers when you are fighting for your disability, they are all bad! ha! but then again i have a super lawyer so it does not matter now.
i did read some of the donny thread and will go back to that for the info on the supplements. thank you.
yes, i had reactions in the hospital in surgery, to morphine and fentanyl. so i cannot take much and do worry about the future and what i will be able to do for pain. it is strange my liver is healthy but will not breakdown many medications. weird, eh? i figured this out with a pharmacist who did a cross study of all the meds that I was reacting to and there was no correlation. so it was the liver, i went back and talked to my pcp about it and he said he had heard of it but had never seen it but it is refered to as a virgin liver. i was not amused ... ha! anyhow, it is bad news for me which is why i try to look at the natural ways to deal with this.
Tranxene is like an ativan or librium but not found to be habit forming, as if i cared at that point! but i have been taking 7.5mg at bedtime for years and have never had to increase it. it is great for panic, i had that bad for a while.
we all get angry frustrated and downright crazy at times with this so you are not alone there.
joan

i'm doing some research on those amino acids and i am wondering what is the PARC website? joan

Hi Joan!

Thanks for more info on tranxene, sounds like just what I need. Since xanax is a benzo and addictive that is why they didn't want to gvie it to me anymore....like you said, as if it matters really? Least of my concerns if you know what I mean!

PARC is a websit that I believ stands for promoting awareness for rsd in Canada. I am so mad at myself right now because they sent me a packet of info that I had requested and now I can't find it ! I'm definitely not the most organized person in the world! I think if you just google it you will be able to find it, it's a really great site. I wish I were a bit more computer savvy so I would be able to just put the link here for you and save you the trouble but unfortunately I don't know how to do that ! Anyway, that is where I read all about the guidelines for treating rsd in the Netherlands, they are light years ahead of us I'm afraid! They also have links to alternative treatments such as acupuncture, chiropractic, etc. I would have to say it's probably the most informative web site dedicated to rsd that I have seen.

I know you said you have a "virgin" liver but I'm wondering about compunding pharmacies that can make alot of the oral meds into a cream? would that still bother your liver? My pm was talking about an intracatheter pump with morphine or a scs. I am desparately trying to avoid either of those options but I know if the pain became unbearable constantly as it has in the past that I would give in, do you think either of these would be viable for you? I've also been reading a lot about hyperbaric oxygen therapy and something called photon therapy but my lean financial state is preventing me from actually doing them....just trying to help, please don't think I'm preaching at you Honestly though, the supplements and the chiropractor have helped me more than anything else thus far...

I too know that there are good and bad in every profession, for whatever reason though, I seem to have been unfortunate enough to have a lot of the "bad" and not so much of the "good"! I'm sure I'll be subjected to some of the "really bad" at the end of the month when I have to go to an "independant" medical exam for work comp! I'm already bracing myself for the B.S. and I also applied for social security disability and they are makin me see a shrink on Monday....so much to look forward too! take care joan, jenny

hi jenny,
i can google quite well, so i will find that site. thank you.
i do not think you are pushy at all with all your ideas, some i have heard of and some i have not, but i am always interested in any and all ideas.
i did try one compound cream but i got such irritation that i still have scars. ha! even on the outside, my body says 'no' to drugs!
yes, you may see some beauties when you go for your SSD. and i was always amazed that i saw two doctors, a pyschiatrist and an ortho guy ... duh? what about a neuro? so much for anyone knowing what i have. anyhow my legal nightmares are over. i got my SSD and LTD with a wonderful lawyer. so, i wish you a quick time of that mess.
joan

Hi there Joan!
You mentioned that tranxene is NOT habit forming?? Joan this drug is indeed a benzo and so is xanax. If you go on a web site htt.//www.healthsquare.com/news.. it will tell you all about this . It says (Generic name being clorazepate dipotassium) and I read on that site that says;"Can be habit forming if taken regularly over a long period." It then go's on to say;" You may experience withdrawl symptoms if you stop using this drug abruptly"! Sue, no I am not offended by what you wrote at all! I think that the doc. should put you on something for your panic attacks.
The old pain management doctor I had, would NOT give me anything but neurontin, and nothing for pain, break through pain. I am now seeing a wonderful doc. who asked me how the pain was while I was doing anything. I told him, and he asked me what I was taking?? I said my Ortho had me on vicodin for a long time. He then gave me Kadian(Time released morphine for this awful, AWFUL pain) everyone is different with this RSD/CRPS Sue, so I would get another doc. Ladies, I am sorry for butting in, but.. I do not believe anyone should have to suffer needlessly with anxiety or pain! Hugs to you both Love, Desi

hi desi,
i am well aware that tranxene is a benzo, however, to clarify myself, it is found to be less likely to become habit forming than librium and ativan.
i have been on the same low dose [7.5mg at bedtime and half a pill for anxiety during the day when necessary, which is almost never now] for years and have never had to up it because it no longer works.
as i always say, different drugs work for different people in different ways, and also have always said, to be your own best advocate and watch how thing affect you, and stop them if you feel you should.
i also think no one should suffer anxiety and depression,and i would have a problem with any doctor who would allow that. as i would have a problem with any doctor that would allow unnecessary pain.
and no, you are not butting in, you brought up a good point and i had not clarified what i said. so thank you. joan